**History of Hashimoto's and elevated thyroid antibodies 1000+ But until recently normal TSH. Normal T3 and T4. Large thyroid nodule that I need to have a biopsy on. Numerous cardiac and other health issues**
So In March I went to the ER because I was having so many PACs (my heart felt extreme irregular) it was coming up on my implantable loop recorder as Afib (it wasn’t) while I was at the ER they discovered my TSH was at 12 but my t3 t4 was normal. Was not placed on medications for thyroid. Fast forward to yesterday (June 13) and my TSH is now at 70 but still a normal t4 although a little on the higher end of normal. They want to place me on the generic version of Synthroid but I’m very concerned about my arrhythmias. I have SVT, atrial tachycardia, I’ve had runs of NSVT (non sustained ventricular tachycardia) numerous episodes of PACS and PVCs. Does anyone else have cardiac arrhythmias and are on Synthroid / Levothyroxine? Or even those who don’t have cardiac issues but now deal with them due to the medication?
Emotional and physically I just can’t handle treatment if it’s going to cause me a large jump in my arrhythmias, they are already terrifying. I worry my cardiologist and endocrinologist won’t think of my quality of life but I also know my thyroid needs to be treated but it could also be causing me issues. I’m just feel overwhelmed and confused.
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Tiffw28
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A high TSH with high normal fT4 seems strange. The first thing to do is check that the assay is giving correct results. Ask your endo to consult with the biochemist in the lab and perhaps try a different assay. I think they should always measure TSH, fT3, fT4 because you have high antibodies and it is fT3 that tends to jump around. If you have normal (average) fT3 and fT4 I wouldn't take levothyroxine unless you are displaying signs and symptoms of hypothyroidism. If you do need to go on levothyroxine then you should be started on 25 mcg as you have a cardiac history.
So the blood work was done at a major hospital during an ER visit so it’s unlikely it’s inaccurate. I use this hospital often and have never had an issue. The T4 was on the higher side of normal so I wonder if it’s on it’s way to being off? T3 wasn’t pulled this time because my reason for the blood work wasn’t because of my thyroid. But it was pulled two months ago and again normal. I did reach out to my endo and I have an appt on Monday thankfully- of course this stuff happens on a Friday afternoon! But I know she is pushing the medication since she wanted me to start it at 12 but I pushed back. She wants to start low and see how it goes but of course I’m scared. I don’t understand why fixing an issue would cause palpitations, you would think it would help to settle them!
Thyroid blood tests are 'immunoassays'. To measure the incredibly low concentrations of thyroid hormones they use antibodies to detect the TSH, fT3 and fT4 molecules. (There are other techniques but they are specialist and expensive). Sometimes a patient will have antibodies similiar to the ones used by the assay and this can give false results. The answer is to try a different assay. So, even the best hospitals can give false results if the patient happens to carry the wrong antibodies. I only have a superficial understanding, here is a video that explains the concept vimeo.com/391024492 .
If you have too little thyroid hormone it can cause heart problems, so can too much hormone. The trick is to find out if you have the right levels. If you are hypothyroid it is recommended treatment is progressed slowly because you have cardiac problems.
Thank you for the explanation!! I will watch the video. It’s a little overwhelming. Sometimes it feels like even the doctors don’t quite understand it completely.
I’m blown away by that TSH but wonder why my t4 is still in normal range barely though. I haven’t started the medication but at this point I don’t have a choice.
I would definitely start on levothyroxine (synthroid). As your doctor is starting you low I guess they are initially giving you 25 mcg which is the starting dose for people with heart problems.
It looks like your thyroid is failing rapidly. The free T3 figure is important. If it is around average they need to check that the TSH figure is accurate, that there isn't interference with the assay. If free T3 is low or low normal then you are hypothyroid and need to increase your levothyroxine as soon as it is deemed safe to do so by your doctors.
The fT3 figure is important. It will give a very good clue as to what is going on. I'm surprised it's not available now as the machine usually runs all three tests in one go. Perhaps double check that they are actually doing it.
Thanks for the reply. So yeah they definitely pulled it along with the antibodies but as of last night it still wasn’t uploaded online for viewing so it may just be a factor of me not being to see the result yet so hopefully it will show up today. They pulled a few other tests that I haven’t been able to view yet either. I will update the T3 as soon as I get it. I know the antibodies will still be high they always run over a 1000.
At this point I’ve had the TSH done three times with high abnormal results each time so I’m pretty sure it has to be accurate. I can’t imagine why it wouldn’t be. I even went to a different hospital to get it done just in case.
They want me to start the 25mg today. I guess what I’m the most curious about is the contradictions I keep hearing about the medication. I’m told it won’t cause cardiac issues unless I’m given too much and my body starts leaning in the other direction (Cardio and Endo said this) yet in the literature it seems like the medication itself is the issue. Also if my thyroid is failing will starting this med slow down the damage or is this just what it’s destined to do and I’m watching it play out? It all sucks. Ugh.
Personally in your experience do you think generic is ok or is this something I should demand brand on?
Doctor emailed me and said T3 was 105. I don’t have the range yet but she said it was still within normal limits. She said in the email TSH is biggest indicator of function that’s why she wants to start the medication. Why in the world is the T3, t4 normal but my TSH is so dang high? Good grief.
That sounds like they have measured total T3 which is not much use. Free T3 is needed. Nontheless it appears that maybe your fT3 and fT4 are low normal and so it makes sense to take 25 mcg levothyroxine. Excess or large increases in levothyroxine can cause problems for people with certain cardiac conditions. Gently incresing levothyroxine doses without going too high is considered safe.
I'm still not sure about the TSH, it does look like there could be interference with the assay. It's possible both hospitals use the same lab or equipment, if this were so the TSH reference intervals would be the same for both blood tests. Even so your thyroid hormone levels seem low so it is appropriate to supplement.
Generics are generally OK although some patients need a specific brand. I think a generic will be fine but try to make sure the pharmacy always supplies the same brand of generic.
Yeah I had her call me in brand name. I don’t want to worry about manufacturers, my pharmacy doesn’t stay consistent and already told me they won’t guarantee which I get so that sold me. I don’t want the drama.
As far as the TSH I’ve done the majority of my blood work at Yale hospital laboratories (my doctor is a Yale doctor) so I think that’s why I’m leaning at it being more accurate than not. But who knows I don’t really trust any hospitals/doctors anymore. That sounds pretty jaded huh?
The T3 finally came up online and the range is 60-181 which I fell right in the middle of normal. I believe it’s the regular T3 not free T3. The free T4 however was almost out of normal range so I’m sure pretty soon that will be low and abnormal. I have my ultrasound and biopsy scheduled for next week. Wonder how much that’s playing a role in all of this.
You really have been very helpful-thank you for being so knowledgeable and kind!!
Certainly in the UK branded and generic levothyroxine are very much the same price. As regards your TSH reading you can have the very best lab assay but if a patient happens to have antibodies similar to the antibodies used by the assay the result goes wild. Your doctor should speak to the biochemist at the lab and point out they seem to be getting strange results. The lab can put the blood sample through a different assay to verify whether your TSH is true or not.
What vitamin supplements are you currently taking...if any?
When were vitamin D, folate, B12 and ferritin last tested?
Are you taking any supplements that contain biotin as biotin can falsely affect lots of different blood test results
Always stop any supplements that contain biotin a week before any blood tests
Have you had thyroid antibodies tested?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
So my vitamin D has chronically been very low- I recently started taking D supplements for it. Iron has always been low and I’ve been on supplements for that. I do not take biotin. I do take quite a high dose of RX potassium (klorcon) as well due to my body not holding it properly. My thyroid antibodies have been elevated over a 1000+ for the past five years that’s how I got the diagnosis for Hash. My t3 t4 has always been normal. My tsh has always been normal as well until recently.
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Apparently t3 wasn’t pulled on either visit. But I know it was pulled a few months ago by the Endo but I don’t have the test results on me. I just know it was normal.
So how does it work when the numbers still fall in the “normal” range? I’ve been told that my free t4 and t3 have always been normal although I did notice all the way back in 2016 when I lived in another state I had one abnormal high free t4 but once I was tested again a few months later it was back in normal range so they said no big deal don’t worry about it.
Hi Tiffw28. Your FT4 level is at the bottom of the lab range. Very, very low at 1.429% and 27%. It should be at >50%, if not closer to 75% of range. T4 gets converted into T3. T3 is the active thyroid hormone, not FT4. With your FT4 being so low, your FT3 is most likely even lower, if not below the bottom number of range. FT4 should never be tested by itself, although it's common for doctors to only test FT4 and not FT3 if they are not thyroid literate. FT4 needs to be tested along with FT3 to provide the accurate picture of your thyroid hormone levels. TSH should also be tested at the same time to provide information about your pituitary function and communication with your thyroid. TSH is not a thyroid hormone. It's a messenger hormone that comes from the pituitary gland.
Do you have any past results that included FT3 and it's lab range?
The vast range of "normal" range means nothing in terms of feeling well and none or few symptoms. People don't function well when their levels are too low (<50%, and heart palpitations can occur when thyroid hormones are too low). Conversely, people don't function well when their levels are too high. For some, >75% is far too high and they'll have heart palpitations, whereas for other people 75% or even slightly higher is their sweet spot where they have the least symptoms.
With your very high TSH, very low FT4 and very high TPO/ab, you should have already been put on thyroid medication. You might need T3 in addition to T4, but you need COMPLETE thyroid labs to be re-run all at the same time first. If your FT3 is not tested and it is too low, if some doctor prescribes only T4, you will still feel awful. Complete thyroid labs are: TSH, FT3, FT4, and your TPO/ab if it has not been tested recently. With your TSH being so high, your FT4 being so low, there is a good chance that your TPO/ab has increased even higher.
Thanks for all your help! I see my endo tomorrow afternoon (Monday) but now I think about it I may have a lab slip left over from her that has the full Thyroid work up on it (T3,4, TSH, antibodies etc) if I do maybe I will go first thing tomorrow morning and get it done so she has it. Is there anything I else specifically I should bring up to her at my appointment? I feel so clueless with these endocrinologists because I have said to them for years something is wrong. Hell even my cardiologists have repeatedly said I think they need to Investigate further, we think some of this is thyroid related and it all seems to fall on deaf ears even when they reach out. I have had numerous 2nd opinions and its still the same old song and dance. Is this field just outdated? There seems to be a lot of women online that have the same complaints of being ignored, not being treated or taken seriously. It can’t all be a coincidence.
I’m also curious how much this large nodule on my thyroid plays a role. I’m finally going to get a biopsy done after putting it off. Little nervous about getting a needle jammed in my throat but I can’t put it off any longer. I can see and feel it. Plus my mom had thyroid cancer.
Now are there any alternatives to taking Synthroid or the similars? What about lose dose steroids? Would removing the nodule change any of these issues? I feel like I’m stuck between a rock and a hard place.
Hi. I got a bit lost with the calculator information.
I use that web site calculator to work my levels out. Do you still think that it's wrong? It's important I know that my % through range is right as I need to see my endo again soon with all my tests written out this way as it's easier to see the percentage when different labs have been used over time.
Hi FancyPants54. It is correct. It is I that is wrong. Serves me right. Dim lighting in the middle of the night, way past my bed time on a calculator that does not illuminate and typing on a PC.
Showing your doctor your percentages is a great idea. You can always use the manual formula to calculate your percentage, too.
I thought it was right because I tried one manually. I’ve got a lot recorded. Much faster with the calculator. GP not interested. But I’m hoping the private endo will appreciate it.
HI Tiffw28 have you been checked for Barrters Syndrome? Inability to hold potassium in the body can be caused by this also low potassium could be contributing to the arrythmias flaring up as it is needed for proper electrical conduction of the heart. Have they checked your levels recently? The reason I ask is my sister has that and her potassiums regularly dips below the recommended level which causes heart palpitations for her.
Years back I was tested for it and I was told no. However I am scheduled to get some DNA testing done to recheck for that and a laundry list of other potentials. One of my specialists really wants to get to the bottom of why my body won’t hold the potassium and why I have so many other health issues. I have a laundry list of problems I have yet to fully list on the site. What’s strange is I didn’t have this issue or a few others until about 7-8 years ago. During that time frame my health went from stable to not so much.
So I take a large dose of Klor-con. It’s 20 meg fours times a day, and my potassium still rides right above what’s considered normal. 3.6 to 5.2 is what the lab here reads as normal limits and I’m anywhere between 3.6-3.9 on a good day. With that much klor-con I’ve been told I should easily be in the mid 4s.
Coincidentally when I have had issues with arrhythmias in the past and I have either been at the ER or in the hospital my potassium has almost always been in the normal range (for me) so they don’t believe it’s that. Although it would have been easier if it had been! At least we would have a reason for it and a possible fix!
Oh no my TSH is high my t4 is on the lower side of “normal” but they still wanted to pass on some information even if it may not be completely relevant .
One thing you really need to find out is whether or not your vitamin and mineral levels are okay. They need to be optimal not just within range. Nutrient deficiencies are incredibly common in people with hypothyroidism because the condition usually causes low stomach acid. When this happens the gut struggles to extract nutrients from food.
Low iron and low ferritin (iron stores) may lead to heart rhythm problems.
Other nutrients of interest to people with thyroid problems are vitamin B12, folate and vitamin D. Low B12 can lead to heart rhythm problems and palpitations too.
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Regarding whether or not being on Synthroid or another brand of Levothyroxine is an issue is something people need to find out with trial and error.
The makers of Synthroid have the largest advertising budget in the thyroid hormone industry in the USA (as far as I know). Don't be conned into paying for the most expensive product on the market by advertising. Give other brands a try.
In the UK we don't have the concept of "brands" and "generics" for Levothyroxine. We have a certain number of brands available and people have to find the one that suits them best by trial and error. Different people feel best on different makes.
I know this is a very old article but it is still interesting :
So yeah sadly my levels are always off. I’m currently taking numerous supplements (Vit D, iron, RX potassium, sodium...) to get them in the normal range. My body doesn’t like to hold on to anything. I take a pretty large dose of the beta blocker Toprol XL (200mg) because my body burns through it.
So that’s also interesting about the stomach. I have gerd so I don’t know if that plays a factor. I’m negative for celiac and other related stomach issues.
"Interference" is when something causes the result of a test not to properly reflect reality.
For example, biotin taken in signfiicant amounts in the days before a blood test, can make the test show high or low. Simply stopping biotin for a week will avoid this effect.
There are many possible causes of interference.
If your test was done on machine A, simply having it re-done on machine B might give a very different result. Typically, A and B would be manufactured by different companies.
I have HCM and have always suffered from episodes of arrhythmias. I take a beta blocker for the HCM and cardiologist aims to keep HR between 60-70 to give best cardiac muscle perfusion.
I was diagnosed with Hashimoto approx 10 years before HCM, the thyroid diagnosis came after an admission with SVT. I’m on Levothyroxine and although my T4 is generally on the lower end, TSH below 1 I feel generally well. My GP has tried to persuade me to come off Levothyroxine as it ‘increases heart rate’ but the cardiologist says the Levothyroxine is replacing the missing hormone I need and has no concerns.
As to your question about others with heart issues, I have a beat of around 100 on resting as my Hashi's normal, and before being placed on Propranolol, was having pvc's every 4-10 beats. I take Thiroyd, though, a natural desiccated thyroid medication
The first thing that occurs to me is: has it ever been suggested to you that you eliminate problem foods like gluten & dairy, to see if that high antibody count will come down?
I've heard of some unusual conditions in which FT3/FT4 can be in-range, but TSH elevated. Euthyroid Sick Syndrome; pituitary dysfunction; thyroid hormone resistance. But I've never had, or never met anyone who has had, any of these.
It seems to me that your condition is rare enough, that you should try to get to a thyroid expert at a high-quality teaching hospital. Most endos specialize in diabetes; very few of them are going to know what to do with an unusual thyroid situation.
In any case, I would not go on levothyroxine, with normal FT3/FT4, unless a talented doc can replicate these test results, and explain what is really going on.
So I’m currently being treated by a doctor associated with Yale University. Most of my specialists are within Yale’s hospital network. But I’m wondering if maybe I should find someone directly at the hospital instead of someone associated with them?
So i’ve never stopped gluten or dairy, I really don’t consume a lot of either but maybe it might be worth it to stop them both and see what happens. I’m so desperate to get this under control it would be worth it. I’ve never heard of the conditions you listed but I will for sure look into them and thanks again for mentioning them.
What’s interesting is I have spent years looking for a doctor to tell me exactly what’s going on, whether that be with my heart, my lungs, my thyroid, my whatever but instead I always hear “well this is all abnormal, something is going on, but we will wait and see what happens.” I’ve been waiting for 8 years....Shrugs I guess. Sooner or later someone will catch on. I hear this is common for people with chronic issues and disorders that fall outside the box.
Gluten was what triggered my Hashi's. But there are other causes. You might want to look into the books by Izabella Wentz, who has identified many of the triggers.
Your experience with doctors is not atypical. I went to MDs for 12 years after my huge crash, but got the shrug routine. Then I went to a naturopath, and got diagnosed gluten intolerant within one year. You're unlikely to get a naturopathic or "functional medicine" approach from any MD. There are a few MDs who understand those approaches, e.g. Kent Holtorf, but they are usually frightfully expensive and don't take insurance. And there are a few DCs, e.g. Datis Kharrazian ("Why Do I Still Have Thyroid Symptoms..."), who are more knowledgeable about thyroid "edge conditions" than MDs.
Wow I had no idea gluten could be a trigger! Although I could see why. I will definitely check out those books, I’m always down to inform myself in any way possible! I’ve thought about seeing a naturopath over the years. I have a friend who swears by hers and she’s doing really well. I just get nervous because I’m so use to the western way of medicine but I also hate the idea that health comes in a pill.
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I appreciate that you saw my error and corrected me before I drift off to sleep. 
Suppressed TSH - Reasons
Positive for antibodies TSH normal
TSH still really high and causing anxiety
TSH
